Does it feel like people don’t take your migraine seriously? Do you feel like people think you are exaggerating? That’s called “stigma.” Jefferson Headache Center neurologist Dr. William Young discusses the perception of migraine and how we can change it.
Care Tuner: Many people with migraine have felt that others don’t consider it a “real” disease. Why is it stigmatized and its legitimacy questioned? How do you define stigma?
Dr. William Young: Stigma is the perception of a person being less worthy than others because of their disease or condition. And because of those negative feelings toward people with the disease, it can result in those people being treated unfairly. I challenge anyone to say that dynamic doesn’t apply to the disease of migraine. People with migraine can be treated badly, and they often don’t realize just how much until they’re finally treated with respect and compassion.
How would someone not realize they’re being treated badly? Do they internalize the stigma?
Yes. Someone will say something ignorant about migraine, like, “Oh, it’s just a headache,” and that act of stigma is absorbed by the person with migraine, even though it’s wrong. Unfortunately, the stigma becomes internalized. There’s a deterioration of self-esteem and psychological distress results. Hearing those things repeatedly, the stigma becomes incorporated as a cultural norm and it changes us.
You’ve been referring to migraine as a “disease,” but even people with migraine don’t know what to call it. What term should you use? A condition, syndrome, a disease?
Naming something is a blend of scientific evidence and cultural consensus by the population using the language, and even that remains fluid: Erectile dysfunction, which was once called impotence, is now a disease. Homosexuality, which was once considered a disease, is now not. But migraine is a disease of such scope, with so many different symptoms and levels of severity that it is okay to have a choice of terms that we can use. But “disease” is the preferable one. People pay greater respect to someone with a disease than a disorder. For many of my patients, it is a full-blown disease that affects brain function.
This is a hot topic: What do you call a person with migraine?
Migraineur or a person with migraine? I prefer “a person with migraine.” The term “migraineur” marinates the person in their disease, much like “schizophrenic” or “epileptic.” It’s better to think of someone as a person who has epilepsy, not that the disease defines who they are. To say “a person with migraine” is a bit more effortful than migraineur, but is more validating to the individual.
Also, the term “sufferer” should not be used. A Buddhist once said that pain may be inevitable, but suffering is a choice. If you want to call yourself a sufferer, okay, but it is a choice that others should not impose on you.
Do you say I have “migraine” or “migraines”?
You should say “I have migraine,” not “migraines,” because migraines emphasize the attacks, while migraine stresses the overall condition. You wouldn’t say “I have asthmas.” You have asthma and sometimes get asthma attacks. Same here, you have migraine and have migraine attacks.
Are there any other troublesome words?
We use a lot of loaded terms in the language of migraine that reinforces stigma without realizing it. For example, there’s a specific type of headache caused by too much medication, and the official term for it in the International Classification of Headache Disorders is “medication-overuse headache.” I don’t like that term because the word “overuse” blames the person for their headache, instead of blaming the doctor who may have overprescribed the medication. Better, blame-neutral terms are “rebound headache” or “medication-adaption headache.” I prefer “rebound headache.”
How does the language we use about migraine affect its place in the larger world of medical research?
The language we use promotes or fights the stigma of migraine. Stigmatized diseases get less attention from the National Institutes of Health (NIH), less attention and respect from insurance companies, and less research from pharmaceutical companies. Take, for example, lung versus breast cancer. Lung cancer causes more death than breast cancer, but it only gets a third of the funding because of the perception that lung cancer is a behaviorally-based disease. There are real consequences to stigma for people with migraine. The more we stamp out migraine stigma, the better treatments, drugs, and care will come our way.
Are there negatives to calling migraine a disease?
Some people with migraine do hesitate to say they have a disease for fear of being considered “less than” by others. But when people hide or minimize migraine, as they have done since the 18th century, we don’t get closer to solutions. We have to be bolder than that. We have to accept that it may or may not work out the first or second time we come out of the migraine closet, but we must persist in being open about migraine or it will never stop being stigmatized and we won’t get the cure we need.
Have you struggled to open up about migraine? Read three metaphors that may help you discuss it in “Spoons, Thresholds and Buckets: Ways to Explain Migraine.”